Introduction and Questions

[Guest guest]

Eating-wise, my son is the same. Never outgrew it. He is 14 now and

very undersized. Very frustrating. He will drink Boost and Ensure,

though.

Judy

V wrote:

>

> Hello everyone,

>

> My name is and my son , 7, has a an

> appointment at the UofM with Dr. in May. Dr.

> is an expert in Autism. We have received a

> diagnosis in the past (in FL) of PDD-NOS and were told

> our son was not autistic because he sought and gave

> affection. Also, despite many OCD tendencies, the

> doctors ignored our concerns about what we referred to

> as our son's fixations on certain things. They also

> could not give us a definitive " plan " on what to do to

> help our son.

>

> fixates on blue, #5, HIS swing at school, HIS

> bathroom stall at school, etc. At times, he gets very

> upset if someone upsets his apple cart; at other times

> he just rolls with the flow. It can be very

> confusing, needless to say.

>

> He also tends to become " wired " in larger group

> settings. This last summer we disovered is deaf

> in one ear - he told us. He has been tested many

> times in the past because of his speech delay, but it

> was never caught. So, much of his behavior in larger

> settings we have attributed to his inability to hear

> in stereo, and since we, and his teachers, have been

> able to address this situation, his behavior in larger

> and louder settings, such as music class, has improved

> dramatically. The schools have been known to drag him

> down the hall to music kicking and screaming. Not my

> idea of a solution, but they were determined to not

> let this child tell them what he was going to do or

> not do.

>

> We originally began to seek answers because was

> speech delayed at 3. By 4, we heard from various

> doctors, possible PDD-NOS, possible ADD, possible

> ADHD, and " we aren't sure, there isn't much known in

> this area " . While insurance and the school were as

> uncooperative as they could be, we have somehow

> managed to combat all of 's problems and he is

> functioning extremely well academically, good

> emotionally, and slightly behind socially and

> communicatively (about a year or so).

>

> One of the biggest concerns I have is with his eating.

> He is extremely controlling in this area. He seems

> to have a very heightened sense of smell and will

> refuse something from across the room - in the past

> anyway. Now, he has managed to narrow what he is

> willing to eat down to almost nothing - no vegetables.

> Recently he began refusing juice boxes. He will eat

> peanut butter on TOAST, peanut butter on crackers,

> chicken tenders (Fast Food - now only from Burger King

> although he will now eat them at certain restaurants

> and Tyson at home if we convince him they buy the same

> ones Burger King uses), french fries, mozzarella bread

> sticks, milk, water, french toast, pancakes, cereal

> (cherrios, honey nut cheerios, Captain Crunch peanut

> butter), instant oatmeal (Maple and Brown Sugar only -

> although he is trying to phase this one out now),

> goldfish, potato chips, tostitos, chocolate. Believe

> it or not, he is thin and his blood work, etc, is all

> very good.

>

> One psychologist told me to refuse to give him

> anything else to eat except one new item for three

> days. We tried corn because he had eaten it as a baby

> and toddler. I went nearly a week - he chose to

> starve rather than give in and try one kernel. That

> was a bust. So, now I just try to feed him as healthy

> as I can and supplement once in a while with Ensure (I

> tell him it is chocolate milk). I do not want to get

> to the point of relying on the Ensure though because I

> worry that he will then phase something out in the

> meantime.

> One advantage to all this is that I get to eat all his

> candy at the holidays!! LOL!!

>

> I am sure I have left tons out, but you understand I

> am sure.

>

> Now for the questions. Do any of you have

> autistic/OCD children? Have you heard of or seen Dr.

> at the UofM? Do you have any suggestions on

> what we should ask Dr. ? What are the

> different schools of thought as far as treatment for

> OCD in children - can someone give me a synopsis

> without TOO much detail? Feel free to jump in with

> anything I have missed.

>

> Thank you,

> in MI

>

> __________________________________________________

>

[Guest guest]

:

First, I do not know Dr. , and so am no help on that issue. I'm sure

Kathy and will have advice on what to ask, so I won't deal with that

question either. However, I WILL jump in on the food issue. When you said food

issues I anticipated you would list just one or two things -- like the peanut

butter. I was impressed that your son's list was so long. Many kids have food

preferences, some are just stronger than others. I think the advice you were

given was dreadful. I would never create any kind of battle over food -- if the

problem were severe enough to require tube feeding due to OCD or other issues,

that's an entirely different problem. My son, dx OCD, MD, ADHD, PDD-NOS, LD in

written expression, has very strong food preferences also. For a while he would

only eat Schwann's chicken patties and plain pasta. He still refuses to eat any

vegetable other than one small broccoli floret -- anything else I have him take

a bite of causes a strong gag reflex. The only fruits he will eat (and only on

occasion) are apples and bananas -- and the bananas cannot have a blemish; they

must be absolutely yellow -- no brown, no slightly green. He now will drink

lemonade and cranberry juice, otherwise just milk and the occasional soda I

allow him. But he was always healthy. When he was so greatly limited in his

food choices I supplemented with a good multivitamin. In other words, as long

as your son is healthy and eating the variety that he is, I wouldn't worry about

the food stuff. Oftentimes we create much bigger problems if we dwell on the

food issues.

Some of the issues you mention -- the fixations, etc. could be indicative of the

autism spectrum disorders (ASD) rather than OCD -- it can be hard to tell. Does

he have any rituals or compulsive behaviors? Or does he just have a problem

with change, i.e. if he can't have HIS swing or if routines change. Kids on the

spectrum often are fixated one one particular area of interest, and are

definitely behind socially. They usually just " don't get " the social rules.

You might want to do a search on PDD -- Barb Kirby's website is wonderful, as is

Tony Attwood's book on Asperger's Syndrome. I have it bookmarked on my work

computer -- she's out of U of Delaware.

I wish you luck with your visit with Dr. . Many of our kids have

comorbid disorders -- OCD/TS, OCD/ADHD.

Jule in Cleveland

[Guest guest]

Hi Ursula~~

Thank you for all your info. Lacey has had many CT's done of her sinuses.

When she saw the ENT last week, she looked up her nose with the scope and

sent some junk for culture, (though since it went in through the nose, I'm

wondering how accurate it will be since I think I remember the ID doc saying

that the nose typically has all kinds of stuff growing in it). She also sent

some drainage from one of her ear tubes for culture. Hopefully we'll have

those results back soon. Lacey's pulmonary doctor feels too that many of her

pulmonary problems are a result of sinus problems.....that sinus gunk drains

into her lungs, as you said.

I believe her doctor told me that her IgA was low too. He did say that

testing her now won't be accurate. I was looking through some of her past

medical history the other day and found that in 1991, (when she was only 3

years old), she had some tests done which showed " a slightly low IgG, low

IgA, low IgE, (2), and a normal IgM " . I don't know what all those mean, but

it seems to me that someone should have followed up on it.....maybe we could

have spared her lungs several pneumonias. I guess it doesn't do any good to

think that way, and I am so very grateful that she made it through this last

go-round. I just want to feel hopeful that we have a real chance to get her

healthy and keep her out of the hospital!!

Belinda

Lacey's mom, (14, CdLS, IgG immune deficeincy)

Pittsburg, CA

[Guest guest]

Belinda....sorry I cannot answer your questions... 2 of my boys start their IVIG

on Wednesday......... I've been asking the same questions as you .....

Praying for you,

~Peace Be With You~

Pattie

" God does not call us to do great things but to do small things with great

love. " --Mother

[Guest guest]

Do any of you keep your kids home during the winter? Or do you feel safe sending

them after IVIG?

My daughter started out gradually going to school 3/2. At school 3 days, home

for 2. Then she went half days and then

finally full time. 18 months later she had to cut back again to part time

because of fatigue and infection. Now she is

at school full time and I am proud to report has only missed days associated

with IVIG or a doctors appointment out of

town. This is great considering last year she missed 21 school days. Winter

involves upping her IVIG dose based on her

clinical symptoms, using Pulmicort nebules nightly to ward off respiratory

nasties, a prophylactic antibiotic.

Will this sinus stuff ever end?? Will IVIG eventually help to clear up the sinus

infections, or is it possible we will

have to continue with antibiotics?

Doubtful. Has she had a CT of her sinuses? My daughter has chronic sinusitis

as well as some bone changes which the

ENT says is sinus disease. Her lack of IgA sets her up to not be able to fight

the bacteria that invades the mucus in

her sinuses and respiratory tract. Plus she has sinopulmonary problems in that

she drains her sinus " gunk " (for lack of

a better term) into her chest and not into her stomach (which avoids all the

nausea and diarrhea of sinusitis but makes

for a whopper chest infection). We use a Rhinoflow nasal irrigation machine

which sends a gentle wash of sterile saline

into her nasal and sinus openings and drains out much of her " gunk " . Since the

sinuses are coated with IgA and IgA

isn't in IVIG then the sinuses are rarely helped with giving IVIG. What IVIG

does help with is the secondary chest

infections which tend to follow sinusitis in PID patients. If an infection is

lingering consider getting an endoscope

culture of her affected sinuses to test for sensitivities to antibiotics and

that way you'll know exactly which

antibiotic to treat with.

Does it take the IVIG awhile to make a difference?

IVIG can be known to take anywhere from 3 months to a year to kick in. Again I

want to point out that after her

infusions in the hospital and her outpatient dose that the levels you draw now

will be those of the blood donors that

gave plasma to make the IVIG. It will not be an accurate measure of her status

and would be a false normal level. She

would need to not be infused for at least 3 months and then have the levels

drawn. Plus any antibody titers done less

than 3 months after ceasing would be inaccurate (tetanus, diphtheria, MMR, HiB,

prevnar/pneumococcal, chicken pox, h.

pylori, etc.).

I hope this helps answer some questions.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Hi Lorri, How are things going? Last I heard was not doing well. Did

you increase her Gammaglobulin? We still need to meet. I am only 11/2 hours

away. BARBIE

[Guest guest]

Belinda,

It took my daughter 6 months on IVIG after her sinus surgery to start

to feel better. We did send her to school on antibiotics during those 6

months. I know everyone is different but we did see a great improvement

with bumps in the road on the way. Good luck to you

Lorri Kraft ( 12 yrs CVID)

se of is subject to the Terms of Service

<> .

[Guest guest]

Hi Ursula~~

Thank you for responding. Yes, Lacey does have lung damage and it's not until

just this last month that I'm starting to understand that her lung problems

are actually the result of the immune problem. I thought she just got a lot

of infections because she had abnormal lungs. With her VERY VERY long history

of infections and hospitalizations I guess I am a bit surprised, now that I'm

learning about the immune stuff, that she wasn't treated more aggressively

earlier on. However, her birth mom apparently had a falling out with the

Children's Hospital where she was being cared for during a FIVE month

hospitalization, and opted not to take her there after that. I have a feeling

that may have contributed to the lack of follow-up. Whatever happened is in

the past, I guess, and now we move forward.

Two things that I'm curious about is all the references I've seen made about

joint pain. Lacey walks independently with a walker, but there have been many

times over the years where she has had obvious pain in her ankles and just

wouldn't walk, or even bear weight and we had no idea why. We had Xrays done

and even had a bone scan done one time which didn't reveal anything. Also,

there are times when her knees turn really red and hot, and sometimes her

hands as well. She's non-verbal and has a very high pain tolerance, so it's

always just been a guessing game where that was concerned. Now I'm thinking

it could be related to her immune problem.

The other thing I am wondering about is if the doctor really needs to keep

checking Lacey's IgG. Several of you have said it won't be accurate now that

she's had IVIG, but he said he's checking to see how quickly it falls off

after an infusion. Am I understanding this right? Thanks so much for all your

help.....sorry I'm so full of questions~~

Belinda

Lacey's mom, (14, CdLS, IgG immune deficiency)

Pittsburg, CA

[Guest guest]

Welcome Belinda Gray. I can't answer most of your questions and can only

offer my very limited observations. Rebekah got her first IVIG in January.

She had one infusion in January, one in February and nothing between the end

of February and mid-August. Since mid-August, we have had seven infusion

with between 5 grams and 15 grams. We did not see a huge improvement at

first. We've had 9 infusions and I " THINK " we might be seeing some improved

overall health. She appears to be less sickly and has a bit more energy and

is a bit less fussy. RSV has just hit our town and so I don't want to get

all confident that IVIG is working yet. Ask me in the Spring what I think!!

My point (do I have a point??) is that Rebekah has slowly and steadily

improved on IVIG, but it hasn't been a miracle drug for us.

Pam

wife to (15 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Rebekah has CVID and maybe other stuff

Introduction and questions

Hi~~

I'm new here. I don't know if the info I submitted was given to everyone,

but

this is why I'm here:

\ Does it take the IVIG awhile to make a difference?

Thank you so much for listening, if you made it this far!!

[Guest guest]

Belinda (Lacey's mom) - the scope will usually allow the swab to reach the

sinuses, bypassing the nasal cavity. So you

should see a reliable result. There is also the possibility that the infection

is viral or even fungal. Viral sinus

infections aggravate me because they can linger so long and are so difficult to

treat. Fungal sinus infections are the

scariest to me because they take hard drugs to treat and fungus can be very

difficult to eliminate. Has she had a CT of

her lungs? Untreated lung infections before diagnosis has lead to my daughter

and husband both having lung disease and

decreased pulmonary function. Her deficiency at 3 yrs old could have been

contributed to a transient state and many

doctors will take a wait and see approach. There is a widely held belief that

true deficiency can not occur until 5 yrs

or older. Although treatment can begin before this it is hoped that the immune

system will still kick in and further

treatment (or sometimes lifelong treatment) will not be necessary. This doesn't

necessarily make the doctors negligent

just very cautious.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Belinda - joint pain can be a complication of PID. My husband and daughter have

both had workups for rheumatoid

arthritis, both came back negative. IVIG can sometimes help with the joint

pain. My daughter has had the same symptoms

you mention. Swelling, heat at the joint, pain, redness. She had physical and

occupational therapy for 3 yrs because

of motor delays and in the last 6 months of therapy they were working with the

joints specifically

Checking levels while on IVIG would let you know what her peak and trough levels

were. Her peak level would be the

ultimate amount of IVIG that her body has (usually done 1 week after infusion).

The trough level lets you know what

amount she has retained prior to her next infusion (usually done at the next

IVIG infusion just before the IV is

started). Sometimes the levels are done each week inbetween infusions so that

you know when the levels are depleted.

This would help the doctor determine if the infusions need to happen more often.

Adequate trough levels have been a

point of discussion on this list lately.

Checking the IgG levels too soon after infusing IVIG should not be done in order

to determine whether treatment should

continue, just to make sure that it is being given in adequate amounts or

frequent enough. Hope this helps.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

,

I would appreciate hearing about any information you received concerning

pre-surgical consults. I soon may become involved in this through a home

health care agency with which I am affiliated.

Thanks,

Becky Rolph, MS,RD,CDE

RLR6333@...

Erie, PA

[Guest guest]

I have a friend who has a milk goat. Her son, although he loves the

goat, he doesn't like the idea of drinking goat milk. But, if you

are very clean in your milking techniques, chill the milk quickly and

don't have a male goat around -since they're very stinky, then you

cannot tell the difference between goat or cow milk. My friend's new

favorite game to play with her boys is who has the goat or the cow's

milk. They can never tell, and the more confident the boys aree, the

more likely they are to be wrong in their guesses.

Lynn

[Guest guest]

,

When we started home training with my son for severe ADHD+ we

noticed changes after " a few " sessions. They were subtle at first,

and we asked, " Can this actually be working, or is he suddenly

improving (after almost 7 yrs)? " For us the changes were better

attending during trial teaching, increased eye contact, observing

things in the environment more, playing with toys. In other words,

the changes we saw were in behaviors that one would have expected

a " typical " child to exhibit but that were deficits for him. We had

done a lot of behavioral work before beginning neurofeedback working

on these and other skills, but brain training seemed to spark

development, compared to the sometimes slow training of targeted

behaviors.

Falling asleep easily didn't come until our second phase of

training, supervised. I believe this is because training this time

was based on his brain patterns rather than following a standard

ADHD training plan.

Lots of training!

Best to you and your daughter,

Rah

> > From: Olding <susan.olding@t...>

> > Date: 2005/12/11 Sun PM 07:40:50 EST

> >

> > Subject: Introduction and questions

.. . . . . . . My question is twofold - when should I expect to

begin seeing

> > improvements (or is there any way to predict that) and also,

what kinds

> > of changes should we expect to see first?

> >

> > I'm also interested in learning as much as I can about

protocols. But

> > I'm really clueless about where to begin. Any directions to

resources

> > would be most appreciated!

> >

> >

> > Thank you -

> >

> > Olding

>

[Guest guest]

Hi again ~

Glad you have joined this group.

You said:

<I'm also interested in learning as much as I can about protocols. But

I'm really clueless about where to begin. Any directions to resources

would be most appreciated!>

Joining this group is a great place to start and then learning all you can

so you can do the best with your home training when you get going.

Taking workshops from Pete and learning how to do, and understand the TLC

assessment is critical in making the best training decisions. Like what

Pete and DeboRah said, until you know what patterns are going on in the

brain making headway is slow.

Incase I didn't mention it in my previous email, you can go to

www.brain-trainer.com to look for workshops scheduled, or even schedule your

own. We will be having a level I, II, and Bioexplorer class (the 3 to

start with) at the end of April in Virginia if that works for you (I don't

think they are posted yet).

Hope you start to see improvements soon,

~

Introduction and questions

I'm a new list member, not presently home training but potentially

interested in doing so. My six year old daughter, adopted from China at

10.5 months, has recently started neurofeedback with a professional

provider for a complicated set of issues – PTSD, RAD, sensory

processing dysfunction, sub-clinical but still bothersome ADHD and ODD

type symptoms. I've checked in the archives and saw at least one

familiar name (hello D, if you are still here - I know your name

from attach-china - so glad Ariela has improved so significantly!).

We have only had five sessions. So far I don't think we are seeing

changes. For the first few weeks I was concerned because her sleep

(never great) seemed if anything more disturbed than ever, but I wasn't

sure if we should attribute this to treatment since her first few

sessions happened to coincide with her birthday and date of

abandonment, and she always shows significant anniversary reactions

around that time of year. Her sleep has since returned to a more

typical pattern (for her) which is not great but at least isn't worse.

So far, our daughter enjoys going to her sessions - even though at

times she is oppositional during treatment! It doesn't seem to affect

her overall attitude towards it all, though; she looks forward to

going.

My question is twofold - when should I expect to begin seeing

improvements (or is there any way to predict that) and also, what kinds

of changes should we expect to see first?

I'm also interested in learning as much as I can about protocols. But

I'm really clueless about where to begin. Any directions to resources

would be most appreciated!

Thank you -

Olding

[Guest guest]

Rah,

Your post was great to read! In my experience, I see what you describe. The changes are subtle, but wow! --when I have been working with a child on behavioral changes, once neurofeedback is added, the changes seem to integrate and what a change. Parents describe their child as "normal" and they are also refering to "normal problems" kids have. I think we can teach children anger control, cooperation and other things we want them to learn, and they can do them, but for kids with a dysregulated brain it is very, very hard to do them -- but they can do them -- it is just so darn hard -- and if they get tired, hungry or are not feeling well, all the new learned behaviors are gone! The combination of teaching behavioral changes and parent techniques

--Warmly, T. Lindsey, M.S.,L.M.F.T. Claremont, CA Tustin, CA 909-626-5313 This email and any attachments may contain confidential information and it is intended for the addressee only. If you are not the intended recipient, you should destroy this message and notify the sender by reply email. If you are not the addressee, any disclosure, reproduction or transmission of this email is strictly prohibited.

--------- Introduction and questions > > . . . . . . . My question is twofold - when should I expect to > begin seeing > > > improvements (or is there any way to predict that) and also, > what kinds > > > of changes should we expect to see first? > > > > > > I'm also interested in learning as much as I can about > protocols. But > > > I'm really clueless about where to begin. Any directions to > resources > > > would be most appreciated! > > > > > > > > > Thank you - > > > > > > Olding > > > > > > > > >

[Guest guest]

Rah,

Your post was great to read! In my experience, I see what you describe. The changes are subtle, but wow! --when I have been working with a child on behavioral changes, once neurofeedback is added, the changes seem to integrate and what a change. Parents describe their child as "normal" and they are also refering to "normal problems" kids have. I think we can teach children anger control, cooperation and other things we want them to learn, and they can do them, but for kids with a dysregulated brain it is very, very hard to do them -- but they can do them -- it is just so darn hard -- and if they get tired, hungry or are not feeling well, all the new learned behaviors are gone! The combination of teaching behavioral changes and parent techniques with

--Warmly, T. Lindsey, M.S.,L.M.F.T. Claremont, CA Tustin, CA 909-626-5313 This email and any attachments may contain confidential information and it is intended for the addressee only. If you are not the intended recipient, you should destroy this message and notify the sender by reply email. If you are not the addressee, any disclosure, reproduction or transmission of this email is strictly prohibited.

--------- Introduction and questions > > . . . . . . . My question is twofold - when should I expect to > begin seeing > > > improvements (or is there any way to predict that) and also, > what kinds > > > of changes should we expect to see first? > > > > > > I'm also interested in learning as much as I can about > protocols. But > > > I'm really clueless about where to begin. Any directions to > resources > > > would be most appreciated! > > > > > > > > > Thank you - > > > > > > Olding > > > > > > > > >

[Guest guest]

Thank you once again for your patience with what must seem a very

ignorant newbie.

~

Everyone on this list has been a newbie and some of us are very much still.

You'll find the more you learn the more you realize how much you don't know

and how much more there is to learn.

There is a very large learning curve, I hope you enjoy the ride as much as

I do.

~

[Guest guest]

This past week was a bit unusual in that she seemed both better AND worse.,I remember this very thing at the beginning of "phase two." I told our supervisor, "His best is better and his worst is worse." That seemed to be short lived. Here's hoping that's a good sign for you! I hope you're keeping good notes at home, because sometimes it's hard to see what's happening until a little later.> I have the print-out of her assessment but it's not in words . . . I see special notations about Cz, C4, F4,F3, Fz. A HB/B ratio of .65? . . . ("Swingle" ratio - search the archives for recent discussion on this)That's the way the TLC assessment looks! Once someone tells you what they all mean it makes a lot more sense.Rah

[Guest guest]

,

If you are working with , you're in excellent hands.

The response to training you describe is very positive and reassuring. The

ability to make contact and express affection is a great start. In many cases,

people who have these very difficult early years lock themselves inside as a way

of not feeling those negative and frightening feelings. Her opening up (and

perhaps becoming a bit more open about the bad feelings as well) is probably a

very important first step along her road.

Pete

>

> From: Olding <susan.olding@...>

> Date: 2005/12/14 Wed PM 12:44:31 EST

>

> Subject: Re: Introduction and questions

>

> Thanks Pete, , and Rah for the welcome and helpful pointers.

>

> One of the things that makes it really hard to judge whether we're

> getting any response yet is that our daughter has always been

> inconsistent. I know that is typical for kids who get labeled ADHD and

> PTSD, but it's even more typical of her, if that makes any sense!

> Despite years of trying, I've never been able to predict her behaviour

> very accurately. She's always fit the profile of the proverbial little

> girl with the curl in the middle of her forehead ? when she is good,

> she is very very good, but when she is bad....So it's tough to feel as

> if we have any kind of baseline for comparison.

>

> This past week was a bit unusual in that she seemed both better AND

> worse. More affectionate and " connected " ? lots of eye contact, a

> feeling of reciprocity, real hugs. And most of the time she seemed

> better able to cope with limits. She would fulfil consequences on her

> own initiative, and made choices that would help her to calm down (i.e.

> listen to a relaxation CD after a meltdown, of her own volition.)

> Therein lies the rub, though ? we also had far more meltdowns than

> usual! She got extremely angry and at times violent at any perceived

> loss of control. And she had more trouble sleeping, too. I didn't

> notice any significant change one way or another in terms of impulsive

> behaviour, focus, organisation ? the " ADHD " type stuff. But at school

> they said she had a good week, apart from one " floppy " morning. (She

> flops around to keep herself alert if she's not getting enough

> proprioceptive input and despite our suggestions and an IEP the school

> can't seem to figure out how to address that in the classroom.)

>

> She goes for a treatment today, so we will be asking more questions.

> We're working with Swingle in Vancouver. I think he probably has

> as much experience as anyone in this area with kids who present like

> our daughter and he nailed her character very accurately without even

> looking at the developmental history just on the basis of his

> preliminary assessment. So I do think he gets the picture and has a

> plan. Last week I was able to get at least one question in edgewise and

> the technician said they are working on the " centre of the brain "

> first, (in contrast to what I thought I'd heard, eariler, !)

> though I don't yet know which points. (C's or T's?) From the tiny bit

> of reading I have done so far, I am guessing that either might be a

> sensible way to begin, at least to see the effects.

>

> I have the print-out of her assessment but it's not in words (this is

> where I can see that the plain English of the TLC would be a great

> improvement!) and my own notes were scarce. And I don't really know how

> to interpret lots of the numbers or demarkations. I see special

> notations about Cz, C4, F4,F3, Fz. A HB/B ratio of .65? And other

> stuff I can't figure out.

>

> Pete, thanks for the reminders about the early window of opportunity

> and also the cautions about trying to work at home with an oppositional

> child. I am very aware of that risk! At the moment, daughter is

> oppositional or whiny at times during the treatments yet she also looks

> forward to going and although she may complain or get angry during

> sessions, she also does the work ? somewhat better than they

> anticipated, I think. The two people who've worked with her so far both

> have a good rapport with her. They don't let her get away with much,

> while at the same time they joke around. She seems to look forward to

> going there and is intrigued by the whole process. It helps that an

> adult friend of mine has also signed on for neuro there. This

> normalises the process for our daughter ? helps ensure she won't feel

> singled out or treated as somebody whose brain needs " fixing. " We have

> explained that her brain is really great (true - she is highly

> intelligent - intellectually gifted) but parts of it could work more

> efficiently and so this is like exercise for the brain to allow it to

> be its very best.

>

> I would dearly love to do the training. I don't think a trip to

> Virginia is possible, , though I wish. But maybe I can find or

> make a group here, or closer to here.

>

> Thank you once again for your patience with what must seem a very

> ignorant newbie.

>

>

>

>

>

>

>

[Guest guest]

> Falling asleep easily didn't come until our second phase of

> training, supervised. I believe this is because training this time

> was based on his brain patterns rather than following a standard

> ADHD training plan.

This is interesting... sorry to bug you again but did the protocols

change like from SMR to squash or just the sites?

Tommi

[Guest guest]

Heya,Tommi,any time.

Our initial training, begun 2 years ago, was C3-C4 SMR up/Theta down.

Then we also did some training down of variability.

This summer we began on the right side with a squash and SMR%. That's

when sleep and temper control really improved. He used to sleep well

but couldn't relax and fall asleep til 10, 11 or 12. When he was

littler he used to ask us to " hold him down, " with his legs pinned

between ours and our arms wrapped around him. The things we do!

Rah

> This is interesting... sorry to bug you again but did the protocols

> change like from SMR to squash or just the sites?

>

> Tommi

>

[Guest guest]

> Heya,Tommi,any time.

>He used to sleep well but couldn't relax and fall asleep til 10, 11

or 12.

I have the same problem.

> When he was littler he used to ask us to " hold him down, " with his

>legs pinned between ours and our arms wrapped around him. The

>things we do!

I don't remember what my parents did to me except take me to sleep

between them but I had a lot of nightmares as a kid.

He will thank you when he gets older I think..

Tommi

[Guest guest]

Hello Everyone!

My name is Faye and I've been told by my endocrinologist that I'm hyperthyroid

and have thyroid nodules. One is quite large at 3.9 cm (it's been around for a

few years). I started out as hypothyroid during my pregnancy and became

hyperthyroid about 3 months after giving birth to my son.

My last lab test in May came back as the following (the lab test lists free T4

as " T4 (Free) " ; not sure if that's important):

TSH - 0.166 uIU/mL

Free T3 - 3.75 pg/mL

T4 (Free) - .98 ng/dL

I don't feel like I have clinical symptoms of hyperthyroidism nor

hypothyroidism. I suppose I could have more energy, but my son still nurses at

night, so that makes it difficult for me to tell if this means something is

wrong with my thyroid or I'm just tired from taking care of my son. I chose to

monitor my large nodule instead of getting surgery and I have also held off on

doing the radioactive uptake and scan of my thyroid since I'm still nursing.

I would like to get the iodine loading test and perhaps start iodine, but when I

asked my doctor about it, she scared me by saying I could have a thyroid storm.

I remember looking up some documents, perhaps from here, but they were too

technical for me to make sense of. Can someone comment on if I should be worried

about a thyroid storm or not? Am I even really hyperthyroid? Also, if I decide

to do the loading test, is it fine to do the 50mg of iodine even though I'm

nursing, since it's just once?

Thanks,

Faye

[Guest guest]

Hi Faye,

Can you please post the ranges for those tests? Thanks, Kathleen

Introduction and Questions

Hello Everyone!My name is Faye and I've been told by my endocrinologist that I'm hyperthyroid and have thyroid nodules. One is quite large at 3.9 cm (it's been around for a few years). I started out as hypothyroid during my pregnancy and became hyperthyroid about 3 months after giving birth to my son.My last lab test in May came back as the following (the lab test lists free T4 as "T4 (Free)"; not sure if that's important):TSH - 0.166 uIU/mLFree T3 - 3.75 pg/mLT4 (Free) - .98 ng/dLI don't feel like I have clinical symptoms of hyperthyroidism nor hypothyroidism. I suppose I could have more energy, but my son still nurses at night, so that makes it difficult for me to tell if this means something is wrong with my thyroid or I'm just tired from taking care of my son. I chose to monitor my large nodule instead of getting surgery and I have also held off on doing the radioactive uptake and scan of my thyroid since I'm still nursing.I would like to get the iodine loading test and perhaps start iodine, but when I asked my doctor about it, she scared me by saying I could have a thyroid storm. I remember looking up some documents, perhaps from here, but they were too technical for me to make sense of. Can someone comment on if I should be worried about a thyroid storm or not? Am I even really hyperthyroid? Also, if I decide to do the loading test, is it fine to do the 50mg of iodine even though I'm nursing, since it's just once?Thanks,Faye